Thursday, May 20, 2010

Catch up

Six days out of her Spica Cast and we are finally officially playing catch up. Hooray!

Friday, May 14, 2010

Spring Green

Some of the things a baby can do in a Spring Green Cast.




Wednesday, April 21, 2010

Encouraged and Disheartened

Today was our pre-op appointment for Georgia's cast change this Friday.

The great news is that means we only have 3 1/2 weeks left of casting! When this whole thing started I didn't think that we would ever get this far. It felt like forever away. But here we are, six week into the casting. The worst of it is over and now we can just ride it out until Friday the 14th when her cast comes off in the doctors office.

On Friday the day will go much like her initial casting day. We check into the hospital at 6:00 am and she will go back into the OR at 7:30. They will play with her then put her to sleep with some gas in a face mask and once she is under they will put in her IV. She will get a bath and all lotioned up, a physical exam of her hips and an ex-ray then her new and final cast. Which will be a new color! We have agreed to go with Moms Choice then Dad's Choice on the casting color. The biggest difference in the day will be that we will not have to be admitted to the Peds Unit. We will only have to be in the same day surgery peds unit and could be out of there as early as noon.

This time around it is much easier because we know what the outcome will be. There is a small, small chance that they will find that the casting isn't working and we will have to plan for surgery at that time. The Dr does not think that will happen, but does have to admit that he sees it once in awhile.

All in all this is very encouraging.

The problem is I find myself disheartened at nearly every hip appointment for one reason or another. Going in so excited for this one, since it means the final stretch of casting I didn't expect to come out feeling troubled. But, again, I did.

We talked about what comes next. And what comes next is another brace, the actual name of which I don't know yet. It will be much easier than the cast and even easier and less awkward than the Pavlik Harness, I believe. It will wrap around her waist and each thigh and have a bar in the middle to keep her hips in place. We have known about this brace since the beginning. What I didn't know was how long she will be in it. I knew it would be "several months" which I took to mean about 3 stepping down the time she would spend in it rather quickly. In reality she will be in this brace for at least 6 months, probably longer.

I feel like so much of her babyhood is just taken from me. I have no idea when she's going to learn to roll over or sit up or crawl and how she does any of this in her new brace. All I know is that she has to wear it until she walks then maybe still nights and naps. I don't care that I will have these opportunities with other children we plan on having either, this is her one and only first year and we have to spend the whole thing in harnesses, braces and casts. She will also have regular check ups until she is 5 and then a follow up when she is 10. Each exam presents another opportunity for bad news, for her hips to show that they are not developing properly and for us to hear she needs surgery.

The fact that this has been caught early and is being treated while she is so young is very positive and reduces the chances that she will have any further trouble. It is harder on my heart that I ever thought it would be to have to go in to every appointment and hear that we don't know when this is going to be over.

I understand very, very well that I could be dealing with something more serious like a brain or a heart. Or that I could be in a situation where my child could have been diagnosed with something terminal or something incurable and suffer her whole life with a disability. Still, this is what I have on my plate.

This is my situation with my daughter and this is what is breaking my heart today.

Georgia, on the other hand, is sleeping it off in pure sweetness.



Tuesday, April 13, 2010

Still going

I now understand why every other Spica Cast blog I have found is only half complete. You spend so much time taking care of this stinking cast that you don't have the time to document it. Here's why:

-You have to change your baby at least twice as much as another baby without the cast.
-If your baby has a blowout or a leak up either the front or the back it will take you 45 minutes to an hour for one diaper change.
-Its the saddest part of my day when I have to use the hair dryer on her cast, since the only sound that scares her is the hair dryer.
-If she spits up on her cast you have to cover it with baking powder as soon as you can to keep your baby from smelling like rotten milk
- Its a strange thing lay your baby on the ground and cover her in Antimicrobial Fabreeze, but it works
-Its a huge advantage to have little hands while caring for the spica cast because I can reach way up and way down into the cast to keep her skin from burning or breaking out.
-Once the cast cotton is dirty or wet you have to pull it out very carefully. You don't want to make creases in the remaining cotton that could cause sores on your babies skin. Then you replace that cotton with Always pads. Its very weird to buy a pack of pads for your 5 month old daughter! I was suppossed to get to wait until sometime in her teen years for that shopping trip.
- You become profitent and rigging everything in your house to work with a cast. The high chair, the stroller, the toys ect. It is a great opportunity for creative problem solving!

Here is our home made Spica Cast approved play station.


Georgia is doing very very well in her cast. She doesn't mind it all these days and the shape of the cast fits perfectly on my hip. We get a cast change in two weeks in the OR where she will need to be put under full anesthesia again. It should be a easier day and a shorter procedure.

We are right at the half way point. We've made it this far, we are going to be able to make it all the way.


Georgia and her cousin celebrating Easter in a Spica Cast.

Friday, March 19, 2010

Cast Care- Vol 1.



When Nap Time meets Cast Care.





Even while her front was completely covered by a towel, she spit up her breakfast and it shot out onto the side of her bean bag chair and then seeped into her cast via her peek-a-boo bottom and ran down the inside of her left casted leg.

Hair dryer and corn starch to the rescue.

Who knew it could be so relaxing?

Thursday, March 18, 2010

And the answer is...

A miracle!

After the procedure on Friday we were all pretty certain that we would be headed to surgery in a few months. But, Ladies and Gentleman, you have witnessed a miracle!

Georgia does not need surgery! Her hips are perfectly in place inside of her cast. No Surgery!

Jesus came down and touched her hips and moved them into place on his own, that is the only explanation. After the procedure on Friday you could see on the films that her hips weren't quite right. They were close, but close doesn't cut it when it comes to the development of your bones and joints. Thus, leaded us all to quietly believe that we would be getting a negative result from her CT Scan, having her new pink cast removed, and making plans for an Open Reduction surgery.

But no! Her CAT scan was incredible. Our Dr is "shocked and ecstatic" about the results. He even had the other doctor in his practice read the films to double check.

I'm pretty sure you could hear our collective sighs of relief all the way to Canada.

The countdown is now officially on. She wears cast one for 5 more weeks and 1 day. Then back to the OR for the same routine as last friday, with a physical exam under anesthesia, an x-ray, and a new cast for the final three weeks.

God is good.
All the time.

Thank you, Jesus, for our miracle.

Wednesday, March 17, 2010

This is the Day

This is the day,
This is the day,

That the Lord has made,
That the Lord has made.

I will rejoice,
I will rejoice,

And be glad in it,
and be glad in it.

This is the day that Lord has made,
I will rejoice and be glad in it.

Oh, this is the day,
This is the day ,

That the Lord has made.

Ct Scan at 10:00.
Dr. appointment at 11:00 to tell us definitively if this casting is going to work or if we will be headed to the OR for an Open Reduction in a few months.

Oh, and Happy St. Patrick's Day!

Tuesday, March 16, 2010

The Big Debut

Over the weekend we were out running errands with Georgia and her newest accessory. While at a reputable cell phone store shopping for a new phone for me Daren and I were working on our Spica casted hand off.

During the hand off I say "She just got this cast yesterday and we are still figuring out how to work it."

The lady behind the counter says "Oh no, what happened."

Without hesitation Daren says "Mom dropped her."

The gasp from behind the counter was audible and I could not get the words "No I didn't!" out fast enough. Then everyone in the store laughed.

Point- Daren.

Monday, March 15, 2010

Casting Day.




At 5:00 in the morning the alarm goes off and I'm up. Not that I had been sleeping well anyway. I get up, get my coffee, and shower. I don't shed a single tear.

I run into my husband in the kitchen, we share a brief hug and get on about the business of getting out of the house. As a way to handle his nerves he has made an appointment to take his truck into the shop about three blocks from the hospital while we are waiting. So we both take a car to the hospital. He takes Georgia, so I drive alone and cry the whole time.

We arrive right on time and check in at 6:00 am on the dot. There are Mothers and Father with children in footy pajamas everywhere. I find this equally sad and comforting. The staff is incredibly nice, one of the many perks of being at a Children's Hospital. Not only are they great with children they are great with nervous parents. They hand hold us through the process of checking in and someone is with us nearly the whole time we wait. The registrar walks us up to the nurses station of the Children's Day Surgery hall and from there our Nurse is ours and just ours. And Georgia is fascinated by her. Laughing and cooing and letting her do anything she needed to do with no fussing.



The little teeny tiny green hospital gown is ridiculously cute. Georgia acts like she knows it too as she smiles and talks and makes friends with anyone she can, including our beautiful 11 month old roommate who was there to get tubes put in her ears. Then all of the sudden the paperwork is done, the waiting is over and they walk us down to the OR waiting room. They let me carry my girl who is starting to notice that she's getting hungry. Then at 7:30 on the nose the nurse comes to take her out of our my arms. With blurry eyes, I throw back her blanket and pull up her tiny green gown and kiss her pudgy little legs for the last time for 9 weeks. Then she takes her into her own arms, talking gently and friendly, and I say "I love you" with a shaky voice and she disappears behind the 'magic' doors that open and close on their own. As I fight the tears that are trying to stream down my face another lovely nurse walks us to the waiting area where all of the other nervous parents are waiting.

I sit with my three magazines and flip mindlessly through them, trying to focus on Oscar gowns and who is dating who to pass the time. When what I am really doing is counting the minutes on the waiting room clock. I need this procedure to last more than an hour, nearly an hour and a half really, in order to ensure that they are able to cast her. If they bring me back a child with no pink cast that means surgery. If my doctor walks into that room any sooner than an hour we will be back here in 3 months waiting for an open reduction to be done, and I am praying with my whole heart that this isn't today's outcome. My body is so wound up and nervous that I can't even drink a cup of coffee in the waiting room.

One hour and twenty minutes later Dr. A comes bursting into the room in his normal busy and authoritative way. I am up on my feet before he calls out "Georgia?". He has three filmy pieces of paper in his hands and says to the volunteer managing the place "Can we use this room?" My heart sinks a little bit as I walk right in leaving Daren to gather all of our stuff and take the second chair. The one bit of comfort I already have is that Daren is also a doctor and I know he will be able to see exactly what is on the pictures that we are about to see. Dr. A relieves us immediately but saying "We got her into a cast..."

First sigh of relief.

He then goes on to show us the pictures of her blue dye stained hip joints and gives the whole procedure an "OK". He tells us that it is not the most satisfying reduction and that her hips didn't give him that great clunk that he was hoping for. So we will head back to the Children's Hospital for a CT scan on Wednesday to see how her hips are doing inside of her hot pink cast and that will finally give us the definitive answer to the surgery question.

He is still talking to Daren about the technicalities of the procedure when a nurse pops her head in and says "Would Georgia's mom like to come back?" Again, I'm on my feet in a heartbeat and Daren and Dr. A both laugh. As we near the recovery room door I can hear Georgia throwing a massive fit. "That's her!" I say with a smile.

In the recovery room she is placing all of the blame of what is happening to her squarely on the shoulders of the nurse who is trying to feed her a sugar water bottle. This is when I get my first peek and her hot pink accessory and its cute. I sit down in the rocking chair and try to nurse my baby who is as pissed off as we've ever seen her. The cast is heavy and awkward but manageable right from the start. She came out of anesthesia fighting mad. Mad like a tiger or a crazy women who's just lost her shopping cart. And she was mad at the nurse.

We finally get her to take a bottle of breast milk and she doesn't take her eyes off of the nurse, nor does she remove her scowl. Every time the nurse leans in to make eye contact or even just say "hi" Georgia screams at her. We all find this hysterical and the recovery room nurses make a competition out of who can make friends with our fiery little lady in pink.



They move us up to the pediatric floor where we are admitted. Georgia finishes her bottle while sitting in her Fathers lap, makes eye contact with me and smiles.

I exhale for the first time in days and I smile back. Daren and I smile at each other and the three of us know that we are going to be OK.



We are discharged at little after 6:00p m and head home.

This family is exhausted.

We all crash into sleep, for an hour an half at a time.

Saturday, March 13, 2010

No Sleep till Brooklyn

But she doesn't seem to care.



More words coming soon.

Friday, March 12, 2010

7:30

7:30 tonight is better than 7:30 this morning.







Exhausted.

Thursday, March 11, 2010

Your Dr vs Your Internet

Yesterday was our pre-op appointment over at the Children's hospital.

I went in armed with all of my internet research and all of my questions written down.

Daren wasn't able to make it, so I was going it alone. As I sat in the waiting room cooing to my baby I noticed that I was the only one alone. I felt like telling Georgia, a voice a little too loudly, that Daddy wasn't there with us today because he is at work working extra hard today so that he can be there with us the whole time on Friday. But instead I just told Maureen.

Once in the exam room, it was on. Maureen sat down with me with our file and waited. Waited for me. Then she asked "So how you doin'? "Better" I told her, and we began a warm conversation about how this feels and how I spent the weekend in tears but then we bought several dresses for our girl to wear over her cast and that now I am preparing. "Good" she said with her comforting smile.

Next in came Kathleen. Kathleen is now a very important person to me since she is our Drs. physicians assistant and will be the one who gets to bath Georgia "with real soap and water" in between casts one and two. She too came in and sat down, looked me in the eye and smiled a patient smile as she asked if I had any questions.

And did I ever! You don't spend hours on the internet and not come up with a few outlandish fears and a couple of valid questions. My main outlandish fear was how certain I was that I was going to give my child urine burns underneath her cast. Thus resulting in removal of her cast to heal her skin then starting back at square one three months later. According to the internet it happens all the time and very easily. According to Kathleen, she's seen it happen twice in 15 years.

One point Drs. office. Internet, zero.

Next came the growth and development line of worries.
Q-Babies grown so fast how will she grown while in the cast?
A- Normally. I've never had a child outgrow their cast.

Q- Will this delay her development?
A- No. At most she will be on the late side of normal for pulling herself up and walking.

Q- I kept my own cast dry when I was 12. I will be able to keep hers dry at 30 right?
A- Yes! You will be able to handle this just fine.

After an hour with Maureen, Kathleen, Dr. A, and Sophy the brace guy I was feeling much better and Georgia was napping.

Now armed with my pre-registration paperwork and a confirmed schedule of appointments, CT scans, and the final cast removal date my heart rate returns to near normal and I don't cry all day long.

Turns out, the internet stirs up many more fears and worries than the Drs. office ever could.

Note taken.

Wednesday, March 10, 2010

When God was in my kitchen

This morning God was in my kitchen. There we stood with coffee in my left hand and the whole world in his right.

"Sarah."

I ignore him.

"Sarah." He says again.

"I don't really want to look at you right now" I reply.

"Sarah." he prods.

"I'm really disappointed in you!" as I turn to face him my face gets hot with the familiar tears that have been flowing since 10:00 am last Friday morning.

"Why are you doing this? Why is this your answer!? What does it matter!?" I shout at him in a barrage of accusations I poorly disguise as questions.

" I know this is hard and sad for you. But I need you to trust me" says the God of heaven and earth in gentle fatherly tones brimming with sincerity.

"But this is not what I asked for! And I prayed. And I believed. Just like you told me to do. And you give me this as your answer? You've got to be kidding me!" I snap back.

"How am I supposed to keep believing? This isn't what I asked for! " I say in a instant before taking the time to think

I continue with my line of questioning accusations "I believe that you answer every prayer so why did you tell me no?"

"Sarah, I need you to trust me." he states matter-of-factly.'

"But God..." I start

"Sarah!" shouts God in a tone that says you do not dismiss me. " I need you to trust me, so that she will trust me."

I look away.

My face is hot and getting hotter. The lump I had managed to shove down is climbing back up into my throat and I can no longer hold back the feelings. Slowly I turn my face back to his, and as the tears begin to roll down my cheeks like thunder clouds across the planes, I meet his eyes.

"Ok." I finally say.

Tuesday, March 9, 2010

The X-Rays

Last Friday we went in to see our pediatric orthopedic doctor to have her new x-rays done and find out any further course of treatment. Call it a hunch, call it a mothers intuition, call it God but I knew I was not walking out of that room with good news. Having to wait in the exam room for nearly 30 minutes while our Dr. read out x-rays wasn't a good sign either. When he finally entered the room his first words were " I don't like these x-rays". He throws them up onto the light and walks me through what we are seeing. Georgia's femur bones are clearly too high and a little outside. They are still dislocated. This means casting.

I start to cry.

The nurse comes in with my paperwork to talk scheduling. She has a sweet smile and knowing eyes, the eyes of a fellow mother who has heard disappointing news from a Dr.
"I'm sorry." I say.
"Every mother cries" She says with tears in her own eyes as she recounts for me the time her son had to undergo surgery.

I leave the parking garage and pull over in the nearest residential area I find and start to sob. I don't want my child in a cast of any kind let a lone a full body cast. I'm already grieving the loss of seeing her baby legs, fat rolls, perfect belly, and baby booty every day. I can't get ahold of anyone on the phone. My husband is in surgery and my Mother is out of the country. So I pull myself together enough to drive and head home. I cried all afternoon and again when I gave her her bedtime bath, knowing that this treasured nightly ritual of ours will be coming to an abrupt end for quite some time.

Georgia will be put into a hot pink Spica Cast Friday morning. She will be in the cast for a total of 9 weeks. The cast will start at her nipple line and run down both legs to her ankles. It will be challenging. It will be sad. It will be funny. It will work.

It has too.